Sticky Blood-Hughes Syndrome Support
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Been to see my GP today

Haven't posted much on here recently as I've been too exhausted to think straight. Went to see my lovely GP today to ask about my thyroid but he doesn't think it is a problem as my last test came back well within range and if I'm honest my mother's symptoms before diagnosis were far more severe than fatigue. As time goes by I realise more and more how complex Hughes is.

My back neck and legs are all painful so I suspect that I am having some kind of flare which makes sense after the horrible virus I had for weeks. So back came the old chestnut of whether or not I am depressed or too tired. My doctor has given me a questionnaire to fill in about my mood which I will do. My 'marker' is that when I was depressed years ago I couldn't sit still and didn't want to be at home on my own, whereas now I could happily stay in all day reading, listening to the radio or watching TV and pottering about the house doing what I can, which isn't a lot.

Another facet of Hughes which I find difficult is the sensitivity to medication. My BP is high so I tried one tablet which lasted four days before I felt sick. Started a new one today and am already feeling 'off'. I had at last found a brand of paracetamol that didn't need me sick and it looks like the manufacturer is discontinuing it!

So all in all not a happy bunny at the moment but all I can do is take one day at a time.

8 Replies

This is going to sound very cynical but I cant help but mention it. Having read a recent blog on another HU community recently about how GP's get some of their funding it answered a lot of the reasons about why certain things seem easy to get from my GP and other things are like getting blood out of a stone.

It seems that GP's are governed by something called a Quality Outcomes Framework. Basically they get points (1 point worth £133.75) for treating conditions or achieving certain targets. As you can imagine some conditions are worth a lot more to them than others and achieving certain things can be very lucrative.

For instance, if you have a thyroid condition and they take your TSH once in 15 months this will be worth 7 points to them.

With Depression, if they can say that they asked 50% of their patients to fill out an assessment tool (so a questionnaire to you and me) so that they can do an assessment of severity at the time of diagnosis, then they get 17 points which is £2273.75 and which may explain why your GP Panda was so keen to get you to do that today.

If they can show that they are having consultations averaging 10 minutes each patient then they get a whooping great big 33 points.

To me this is incentivising certain medical conditions at the expense of others and would explain why a GP will push you to do certain tests, needed or not and ignore others that may well be warranted.

As far as your situation is concerned, I think you have played ball and earned your GP some points so the least she/he can now do is look at you without the pound sign rolling. Ask about Plaquenil which will help possibly with the fatigue and body pain and possibly take some info regarding this from the Hughes website to back up your request.

My worry is that this QOF explains why some GP's are so reluctant to refer. If they are not managing the patient they cant get the points and therefore the dosh!!!

Taking one day at a time is probably very sensible. xx


I am very lucky with my practice. My GP has never been reluctant to refer me if I need to see a consultant or have any tests or scans. Unfortunately Plaquenil isn't an option for me as it was prescribed for me when I was diagnosed in 2002 but I developed a severe allergy, so was given Mepacrine instead which I have been fine with, although how much effect it is having is difficult to judge after all this time.

My husband is very worried about me and wants me to keep a note of how I feel over the next few days and then fill in the questionnaire. Not much of a fan of forms but if I were feeling severely depressed ironically I might have found it easier to hand something over to be read rather than to,have to say it myself.


I can not take many medication as my body rejects it. It annoys the hell out of the hospital. They left me in pain over night because they did not know what to give me. I ened up ringing a family member up as they are a drugs nursecshe listed of medication I could have, the doctor was surprised in the morning.


I dread having to be given morphine as I was once given pethedine when they

Thought I was in labour and I can remember it vividly nearly 29yrs ago! I have had several operations since but fortunately managed with ibuprofen and paracetamol.

Some anaesthetists listen and others don't. I have been given codeine by one even though I told him it made me sick and dizzy.


Tell them you are allergic to it and then they wont give it to you!!


Hi there,

I think you shall be concerned about your blood pressure. Try to keep it down. It can be very important if you have APS.

Take care



A touch of irony. I saw a trusted doctor at my surgery today because I as desperately tired but can't sleep well because of dry mouth waking me what seems like every ten minutes. Actually fell asleep in the waiting room. Got thorough going over putting every other appointment back at least 30 mins. ECG and full exam. Also given depression check list and did badly. Spent a long time trying to find a drug that might fit with present regime but when I got home and read leaflet v uneasy about starting till next week as I have a 100 mile and return drive I must make this weekend if possible. Don't think the form was driven by QOF not least as he will no doubt have had grief from some for delay in seeing them after me.

Incidentally. Pharmacist said this is worst week of year for depression?


Sounds like you too have a good GP. Sensible of you to wait to start taking the pills until you've done your drive.

Doesn't surprise me what your pharmacist has said. Stress of Christmas followed by miserable cold weather and dark evenings?


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